The contribution of online peer-to-peer communication among patients with adrenal disease to patient-centered care

Background: addison's disease and cushing's syndrome are rare. the dutch adrenal society offers an online forum for dutch adrenal patients to meet and communicate. however,little is known about the added value such a forum has for the delivery of patient-centered care. objective: our aim was to analyze the purposes of online patient-to-patient forum conversations,within the context of patient-centered care. methods: for this study a consecutive sample of 300 questions (threads) from the past 3.5 years was selected from the forum. the content of these patient-driven questions was analyzed based on the dimensions of patient-centeredness of the picker institute. this analysis was performed using atlas.ti. results: from the 390 questions analyzed,80.8% (n=315) were intended to gain more information about the disease,the treatment,and to verify if other patients had similar complaints. to a much lesser extent (38/390,9.7%),questions expressed a call for emotional support. patients answered primarily by giving practical tips to fellow patients and to share their own experiences. conclusions: on an online patient forum for cushing's syndrome and addison's disease,patients appear to primarily gain knowledge and,to a lesser extent,emotional support from their peers. this experience-based knowledge has become a very important information source. as such,patients can make a substantial contribution to the creation of patient-centered care if this knowledge is integrated into the care provided by health care professionals. ©dirkjan kauw,han repping-wuts,alida noordzij,nike stikkelbroeck,ad hermus,marjan faber.